Sunday, July 31, 2011

Have you ever pondered the difference between joy and happiness?Is there a difference?Well, let me give you my perspective and then you can make up your own mind.The backdrop, of course, is the struggles and disappointments of life, in particular, the health issues that Susan in encountering and that color our entire family dynamics right now.

Her serious illness has been a sobering, painful, frightening, and expensive business.It has affected all aspects of her life and ours.It has changed the course of our day-to-day living, replanted us geographically, inspired an early retirement for me, and shifted our priorities.It has also blessed us with a relationship with our grandson and adventures and friendships that we would have never experienced.Susan has expressed many of the ways she has grown and blossomed through this struggle, and we second that emotion.We have thought about the lessons learned of not taking people for granted and not wasting precious time that could be spent with a loved one, or having an adventure.

But my middle name is Claire and not Pollyanna, and let’s face it, some days are better than others.It is during one of these sort-of sad and pensive times that I started to think about the difference between joy and happiness.Here are my working definitions: “Happiness” is an emotion that waxes and wanes based on outward circumstances, or the weather, the day of the week, or if the Red Sox win or lose.“Joy” on the other hand is a condition of the soul based on a decision (to trust God). It is a core value of a person not based on external circumstances.It has a spiritual basis.It is a ‘Fruit of the Spirit’, meaning that as we yield ourselves to God and allow him to lead us; He remodels us into His likeness and His character begins to take root in our lives and bear good fruit.But the fruit of the Spirit is love, joy, peace, patience, kindness, goodness, faithfulness.Galatians 5:22.

We all have challenges and struggles in this world and my desire is to face mine with joy, no matter what.I choose joy, based on my unconditional faith in a loving God and knowledge of His perfect plan for my life.

Thursday, July 28, 2011

Some weeks just seem to come with their own theme. Today as I was wracking my brain for a blog post, I reflected on this week, and there it was. Trust. All this week, the topic of trust has been coming up. It came up when I was getting ready for the bone marrow biopsy on Monday when I felt sad and my bottom lip quivered. The topic came up in many conversations some positive when I saw trust in action and then quite terrifying when I could see what a lack of trust could do.

I realized that God was nudging me and asking me to place my trust in Him. He has already promised me that His desire for my life is that I will be well.

Bless the Lord, O my soul;

And all that is within me, Bless His Holy Name.

Bless the Lord, O my soul;

And forget none of His benefits;

Who pardons all your iniquities;

Who heals all your diseases;

Who redeems your life from the pit;

Who crowns you with loving-kindness and compassion;

Who satisfies your years with good things;

So that your youth is renewed like the eagle.

Psalm 103: 1-5

I guess we all just need some reminding that what is happening right now in yours and my life is nothing short of a stepping stone that leads to the next great thing. I am reminded this week that trust is a two way street. God asks that I trust Him and reminds me that He has trusted me.

...From everyone who has been given much, much will be required; and to whom they entrusted much, of him they will ask all the more.

Luke 12:48

This verse always inspires the joke, gulp, I wish God didn't trust me so much. My thought is one of awe about what God might possibly be preparing me for. It must be grand because I am certainly undergoing a major training program. I am also painfully aware that this is a voluntary training program that I may drop out of if I choose. No need to worry folks, I was blessed with an extra portion of curiosity so I plan to see this through. I just gotta know what is on the other side.

Today I have given you the choice between life and death, between blessings and curses. Now I call on heaven and earth to witness the choice you make. Oh, that you would choose life, so that you and your descendants might live! Deut. 30:19

I hope﻿ that you will also be reminded of the many promises we are given and I hope also that you are inspired to keep moving forward. We are richly blessed and dearly thought of. He is worthy of our trust.

Tuesday, July 26, 2011

Today we are going to find some small nice thing to brighten someone's day. Then report back to me what you did. Please send it to suzi890801@msn.com. Tomorrow I will post all the things we went out and accomplished in our attempt to spread some love.

Susan

I heard back from one person. My mother. She stopped off to buy herself a cup of coffee and saw a woman counting up her change and asking the clerk to help her out so that she could have a breakfast sandwhich. Apparently the woman knew the clerk. Mom bought her a cup of coffee and her choice of sandwhich and then asked her to pay it forward by being kind to a stranger in need.

Sunday, July 24, 2011

A sampling of some of my Favorite Things
1. Huy
2. Tan
3. Incredibly Supportive Family
4. Well diversified and hugely supportive grafted in family
5. Those I have had the honor of helping
6. Places I have had the privilege of visiting.
7. Spencer and Zeke and the unconditional love they give me
8. Dreams that I have seen fulfilled.
9. Being allowed to inspire people not to give up.
10. Knowing that while there is strength left in me I will continue on these endeavors.

Friday, July 22, 2011

If you are a faithful follower of this blog you have noted that the cancer has spread further into my bones as indicated by my recent PET/CT scan. I also have my tumor markers tested through my lab work and they have been inching up. My latest reading was 303 which is not bad as it was 376 after my last chemotherapy treatment this past January.

My Doctor promised that I would stay on the oral anti-estrogen Aromasin until it was no longer effective and the disease began to progress again. I was able to get five months out of it, which my Doctor indicated was decent as many are able to get 5-8 months, but that it was now time to change things up. As we looked at our options she decided on an oral chemotherapy, as opposed to IV chemotherapy, and prescribed me Xeloda.

It comes from a specialized pharmacy in Texas and what you see in the picture is what arrived by Fed Ex. I have to admit I was a little impressed. The soft mouse pad type material bag, Xeloda, pill organizer, colorful booklet of symptoms and medication information, a chemotherapy cookbook, and a lotion sample. I am scheduled to take my first dose beginning next Monday following a bone marrow biopsy. All medications come with a laundry list of side effects and chemotherapy drugs are no exception. I do not know how I will tolerate this new chemotherapy, but I will keep you posted.

I continue to appreciate all the prayers and well wishes I am receiving from so many of you. Monday will no doubt be a tough day for me so please remember me in prayer on that day.

COMPARISON: comparison is made to the previous study on February 10, 2011

FINDINGS: There are no areas of hypermetabolic soft tissue activity in the neck suggestive of malignancy. No areas of hypermetabolic soft tissue activity are seen in the chest. There is no evidence of metastatic disease in liver, spleen, pancreas, adrenal glands or kidneys. Since previous study there has been a significant increase in hypermetabolic osseous metastatic disease. Multiple hypermetabolic lesions are present throughout the entire spine, sacrum, pelvis, ribs, and the sternum and proximal long bones. The previous study demonstrated only significant hypermetabolic activity in the left sixth rib. The extent of hypermetabolic disease is not as great was seen on an earlier PET/CT scan on August 20, 2010. There are diffuse osteoblastic changes on the CT mapping study and multiple mild compression deformities in the thoracic spine and lumbar which are stable.

Saturday, July 16, 2011

Now faith is the substance of things hoped for, the evidence of things not seen. Hebrews 11:1

He replied, "Because you have so little faith. I tell you the truth, if you have faith as small as a mustard seed, you can say to this mountain, 'Move from here to there' and it will move. Nothing will be impossible for you." Mathew 17:20

The dictionary defines faith as having a belief in someone or something that is not based on proof. The Bible, as indicated above, concurs and promises that only the tiniest amount is sufficient. I am holding firm on that promise because I have a great desire to beat the illness that is troubling me and to be here to see my son grow into adulthood.

You notice I didn't mention the "C" word by name because I try hard to put my faith into practice by refusing to state that I have "C". I do not want to profess that or give it any foothold. I prefer to state that I am having an issue with cancer or that I am troubled by it because in my mind and in my faith, I am waiting to be able to say that this is no longer the case. I have faith that this will be the case, though I am praying that God's will be done. I hate to sound tongue in cheek on such a serious subject but I figure I have a win/win proposition going.
Living in Colorado Springs gives me the privilege of seeing the mountains on all but the most overcast of days. I would hate to deprive anyone of waking up here and seeing their mountain gone but I am going to take the Bible at it's word that with enough faith I could make that happen. Instead, I will focus on more personal pursuits and demonstrations of faith. I get a pretty nice view of that mountain on my way to work. It always reminds me of my favorite verses which are Psalm 121:1-2

A Song of Ascents. I will lift up my eyes to the mountains; From where shall my help come? My help comes from the LORD, Who made heaven and earth. Psalm 121:1-2

Thursday, July 14, 2011

Today I had a PET Scan. If you have never had the pleasure of this experience, take it from me, pass on that. Fortunately, I was experienced enough to insist on the early morning appointment, rather than go for the afternoon appointment. You may not eat 6 hours before the exam and there is a little lie detection test they give you, otherwise known as a blood sugar test, just to make sure. Next they inject you with some radio-active sugar and make you drink a small amount of a barium cocktail while you sit for 45 minutes so that everything has a chance to work through your body.

While I sat, I was alone in a small room, reclined in a lazy boy chair, covered with a warm blanket, the lights were dimmed, and soothing music played a small boom box. I was grateful not to be drinking my berry flavored barium in the waiting room, but I felt a little sad. That sadness grew and I was approaching a full-blown pity party when I caught myself and told myself to "snap out of it."

I don't say this to sound inspirational or act all goody two shoes, because that is not what I am aiming at here, I really did this. I simply realized as I was feeling sorry for myself that it didn't feel good. I was facing something unpleasant and my attitude made me feel worse. As soon as I made a conscious effort to change my attitude, I started to feel better. Once I started feeling better, I was able to pass the time in a peaceful and pleasant way, and it was over before I knew it.

In fact, I was soon having my port de-accessed and scooping up some coffee cake in the chemotherapy room before striding out the door. Having a PET scan is not a pleasant way to spend a morning, but I will be grateful for the information that it gives my doctor and the help it will give me in making treatment decisions. As for my attitude, it is a work in progress, but I hope that I will keep selecting a positive one as long as I am able.

Sunday, July 10, 2011

I can't begin to guess at how many hundreds of times I have driven by the "Hampton Beach, NH" road signs on the way to or from somewhere else - without ever stopping. I find it hard to shift gears and plans at 70 miles an hour, and I tend to try and squeeze in too much into a day, in general. That leaves me no opportunity to just stop and smell the roses, or sea spray, as it was.

But, we did plan to stop for the night at Hampton Beach on our way back to Colorado. We thought it was a nice opportunity to get almost to Boston and break up our travel into some realistic bites, which is especially important when traveling with a 26 month old. So after a harried morning in Surry and washing the floors on our way out the door, we did get on the road shortly after noon. We were tired, dirty, and hungry to say the least. To say the most, we were exhausted, filthy, and starving - but we were on our way.

We arrived in New Hampshire without incident (which is amazing in itself the way our travel had gone on the front end of this trip) about 5pm. We checked in, ordered some dinner, and settled in. After that, Tan and I hit the beach.

It was a beautiful evening and after dipping his toes, Tan began to get the idea. He found a paper cup and started digging holes. He waded in and then sat down to enjoy the surf, chest high. He ran into the waves and let them push him back. He was fearless and I was fearful so we made a good team with me holding him firmly but letting him revel in the sand and surf. I finally dragged the shivering baby back to the room. We both had huge grins, sand in our suits and hair, and stories to tell. We couldn't wait to get back the following morning with "GramPY" and Mommie.
Our trip to Maine was not perfect, but we took the time to make some memories and just play. Somehow, that is what is standing out now.

My husband and I spent an evening away, this week, in a small casino town full of historic sights and things to do. My husband enjoyed spending time there before we were married and though I do not enjoy this type of past-time, it was nice to be with him.

Fatigue has been the biggest problem I have encountered while struggling with cancer and I often miss being able to get out and enjoy my life. I am working still, and we have a two year old, so a lot of energy is expended on my day time activities. When the afternoon arrives I am often wiped out. My husband is very active and misses having my company going out and doing things. He likes to shop at Costco and get out of the house and I find that I am forced to conserve my energy.

Cancer and other major illness' can be tough on a marriage. Sometimes, it feels like his is zigging while I am zagging. On this evening, though, it felt to me like we were in the same place at the same time and it felt nice to be with him. It is a weird realization to live in the same house with someone and then to feel that you have missed them. I have missing him and I have been missing the me that could run out and do stuff. In some ways, the fun me, got a little sidelined while I was in survival, deal with cancer, mode.

I am reminded to make time for dates and catching my husband in the middle of a zig so that we can spend time being a couple. I do not think I actually forgot any of that but fatigue can really slim down your social calendar. I am feeling better and trying to exercise and be active. I want very much to regain some of my former activity level. I think it is another sign that I am doing better. It feels like a tough walk uphill but it is a rewarding use of my energy.

Tuesday, July 5, 2011

My friend Roxanne called me when I was in Maine to tell me, very excitedly, that her father had consented to let us take his 1966 Corvette for a ride. He has owned that car, nearly all of her life, and this was the first time that she was going to be able to drive it for any distance. Her father has always been a hard working man who delighted in his toys and took excellent care of them.

Driving this car was a life long dream for her and we meet up in Bucksport, Maine at a favorite Chinese Restaurant of mine. When she came over the bridge she called us so that we could see her pull in.

This car is a beautiful sight to behold and makes a yearly appearance in the Brooks, Maine, Fourth of July parade. She stated to me on the phone that she was all stressed out driving this car and was going to enjoy relaxing over lunch. I chided her that this was supposed to be fun and that she was accomplishing a bucket list item that had been on her wish list a lifetime.

Over lunch I enjoyed teasing her but knowing how much her father loves that car I could appreciate her angst about getting that car back to him safe and sound. After lunch my sister returned home and Roxanne and I took pictures and then went for a ride. In my adult life I have not had the pleasure of riding in a collector's automobile and I loved it. It was so cool to see the inside of the car and all the components from 1966 (the knobs, the radio, etc)..so cool to experience a piece of history. Cars are a lot different today and this car had no power steering and a big powerful engine which made it sound and feel like we were driving a lot faster than we were.

It was a lot of fun to share this experience with Roxanne and I owe a debt of gratitude to her father for this treat. That being said, I turned into a nervous Nelly and kept imploring Roxanne to slow down. We giggled and talked and I snapped pictures of all aspects of this car but was relieved when we pulled into her parent's driveway.

Once there, we enjoyed taking pictures of ourselves with the car and I declare that this was the best part of the experience. Her father and mother came out and laughed at us and posed us and took even more pictures. Roxanne joked with her father that if she had driven the car twenty years ago she would have had the scare of her life and the intrigue would have been gone.

car door view of knobs

At any rate, Roxanne is the very best bucket list buddy to have and if I had more creativity and an endless supply of money you would see us crossing things off the list on a monthly basis. I hope that everyone had a wonderful Independence Day. I am looking forward to seeing the Brooks, Maine parade pictures from Roxanne. It is a big hometown celebration there and I am sorry to have missed it.

Roxanne...I love you and I love our adventures. Let's start planning the next one!!

Sunday, July 3, 2011

We recently spent three weeks in Maine, during which, we were able to do fun things amidst the planning and preparing for Tracey's wedding and getting the yearly house maintenance accomplished.

On the way back to Boston, to fly back to Colorado, we stopped and spent the night in a hotel situated on Hampton Beach in New Hampshire. It was a short amount of time, in relation to the three weeks we had just spent in Maine, but it will forever be a favorite memory of mine.

Beaches can be crowded places in the summer time, but Mom somehow timed it just right. Once we got settled into our room, she brought Tan to the beach that evening, and then we all went again in the morning before taking off for the airport. It seemed we had the whole place to ourselves, at those hours, and added a magical touch, as if it had been reserved for our entertainment alone. Tan enjoyed playing in the waves, digging in the sand, and just running around in the wide open space.

I am sad to report that I was experiencing bone pain and fatigue so I was not able to enjoy the beach in a practical sense, but sitting there breathing in the smell of the ocean and seeing the joy on my son's face left me feeling quite satisfied. It was an expensive evening, as far as money is concerned, but the memories we made that day are priceless. I am thankful to my generous and thoughtful parents who planned this as a way to break up the long travel for me and my two year old, and to give us the gift of a day at the beach. It is a sight that I often long for, as I live in Colorado, so any time spent near the Ocean is a welcome gift.

Since I work a lot with military members, I see a lot of people who are separated from their extended families, their spouses, and their children, for extended periods of time. I have met many individuals who did not have a good childhood, and who do not have very many memories of family outings or special days. I am reminded of the quote by George Eliot, who wrote, "it is never too late to be what you might have been." I believe that this is also true of memories because you can begin today to make pleasant ones.

I count myself blessed to be born into a family whose values were to play with and spend time with their children. I have been given a multitude of special memories of things we have done and places we have gone. Even when we could not go anywhere more elaborate that than the dollar movie theater, or to buy a snow cone on a hot summer day in Texas, my parents were quick to supply at least that. Even now, when we all get together, we laugh and joke and the time is enjoyable. Our trip to Maine had some bumps in the road but we traversed them laughing ourselves silly.

I am proud to say that when my own little fledgling family found itself in the battle of my lifetime, I was quickly surrounded by my parents who were quick to sacrifice themselves, once again, to help me. They circled the wagons along with my local and now grafted-in Colorado family to support me and Huy and our son Tan. It is a humbling and beautiful thing to be the recipient of so much love and care. Additionally, I have hundreds of kind and caring folks praying for me all over the country. I truly believe that because of this outpouring of prayer, love, support and God's mercy I am looking and feeling quite well. I have more energy and stamina and can use it to work, travel and assist in the care of my son. This is a pretty powerful statement when you remember that at the time of my diagnosis (Oct 09) I was unable to lift my infant son and could walk only with great difficulty.

Cancer is a crisis that affects everyone in a family. In the beginning, I could not think of any word more scary than cancer. Ok, well the word chemotherapy ran a close second for me on the scary scale. I am 21 months into this cancer journey and I know that I would not feel as incredibly blessed as I feel today had I not experienced this. I do not see cancer the same way today that I did back in October 09. I do not see my loved ones the same or any opportunity to celebrate life. I hope that I may be able to teach my son the importance of creating some special memories and spending time loving and being loved by family along his journey. I pray that you will also be able to take some time this summer and make some special memories of your own.